That daily fight

MS Love Life imageSometimes it seems that the hardest battles you will ever have to fight will be the battles with yourself. You strive to get through hours of hard grinding for upcoming exams, or you want to get fit after Christmas and New Year’s parties. We’ve all been there, and the older you get and the harder you seem to try, the more difficult it gets.

I’m no stranger to being my own worst enemy when it boils down to fighting health issues. As years go by, and the wiser I should become, I simply cannot turn it into a ‘Remember when I finally learned my lesson?’

After my MS diagnosis in 2005, I told my ex-employer and ex-colleagues countless times, ‘This time I know what to do and next time I will not work too hard, too long, too much etc.’ after being off sick again. Seven years later, I am still telling friends and family the same thing, even when I had to quit my job in 2009 because of my MS. Oh, I do know I have to pace myself, but when will it ever stick?

Being diagnosed for some people is probably one of the best things that could have happened to them because of the permanent carpe-diem-effect after the initial shock wears off. Getting a diagnosis of an illness that cannot be cured may seem like December 21st 2012 on a Mayan calendar to others. It is not the end of the world for all mankind, but it’s definitely the end of the world as you’ve lived it so far. It is never easy, even for those who think, ‘Finally I know what is wrong with me, now let’s get on with it!’

Yes, I clearly belong to the first of the above examples.

In come neurologists, physiotherapists and lots of other –ologists, out goes your sense of being super strong. No matter how many -ologist appointments you collect, don’t let them overwhelm you. Ask for a time-out when you feel that they’re overcrowding your personal world or your thinking.

The medical world is one of heartache at the time of diagnosis, but a saviour when you need them most. No matter how big their paycheck, they truly want what’s best for you (as they see it).  Ask specialists for advice, talk it over with family and friends, go back to the -ologists and decide what you think would be the best way forward for yourself.

Don’t be like me, don’t be all gung-ho in everything you do. Five weeks after my diagnosis, denial had worn off and I  decided I would be Superwoman. I was skinny enough to fit in her tight leotards, and my hair was still black enough to say, ‘I will show them what I can and what I will do! They haven’t seen anything yet at work and in my private life!’ But after coming home from work in the evening, the staircase had transformed in Mount Everest and I had no energy left to take the last sixteen steps to my bedroom. Oh yes, MS fatigue is absolutely NOT like normal after-work tiredness.

Superwoman?

Not in a million years!

Being a workaholic, my job was my life. Lazy as a kid, workaholic as an adult. I received two achievement awards at work two years after being diagnosed. They’re still proudly hanging on my bedroom wall as a token that MS doesn’t have to be a stumbling block per se. One certificate of recognition was for finishing Team Leader training, and the other an achievement award after “receiving excellent feedback from the account management” for writing, changing and training onsite teams across Europe.

Overtime? Of course I will!

Come up with new ideas to help the team forward? Of course I’ll do some brainstorming!

“No” was not a word I understood anymore (My mum swears I’ve never been a girl who would accept help, no matter how difficult it was).

By the time I finished my Team Leader training, my body decided that now was not the time for something so big. Realizing this caused a minor breakdown, but breakdowns are not something I do. I am not afraid of showing weakness, but I will never allow myself to settle for anything less than what I or other people deserve.

Hence why I am still so determined to succeed in whatever I do, and why I’m still so hard to sit down.

Maybe I ended up with ten LinkedIn recommendations because of this. I don’t know. Just loved my job.

After work, I would go out with friends; we’d go to the cinema where for about 2 years, I simply couldn’t stay awake during films. I now joke that I need to see a lot of films again from that time, as I only caught the beginning and the end the first time. In between I’d sleep, just sleep through loud alternative or Hollywood film antics, people kicking the back of my seat and people trying to get out to run to the bathroom. Apparently, although physically present, War of the Worlds happened without me altogether.

Other days, I’d drag myself into town at snail-speed to meet friends for a chat. During weekends we’d go to the seaside, or watch some more films and go for a meal, but I had to give in. I was not my old physical self anymore.

And that hurt badly. After all, didn’t I move to Ireland to study, travel around this little green gem of mine and go hillwalking and rock climbing? Now I couldn’t even climb a 16-step staircase.

Severe fatigue became a daily, hourly and half-hourly battle. Neuropathic pains and side effects from my DMDs (disease modifying drugs) would keep me up at night. Worrying about my future started to set in. Will I ever be able to find a new boyfriend with my newly acquired medical status? Will I ever be able to have children? What about my life in Ireland?

Lots of questions, but no answers. Not yet anyway.

A year and a half later, I felt I had accepted MS in my life. When my brother had passed, I lost part of myself. Losing my only sibling while having to let go of my old self made my head spin. Certain friends were not helping by “suggesting” what my life, my future and my illness should look like, because they thought they knew better than I did. In the end, my real illness was no match for their imaginary medical degree, and I realized that friends like this was not something I needed anymore.

As time went on, I could feel my body breaking down bit by bit, and I became envious of friends doing things without me. I had to cancel meeting them more than once, so in the end they stopped asking me along. I had become a liability to others as well as to myself.

Giving up was and still is something I don’t do easily. During my employment, I should have listened to my body and my illness as they were telling me one thing quite clearly: ‘Time to slow down. Pace yourself. Go to bed early. Hell, go to bed during the day when you feel you need to.’ That little angel screaming in the back of my head was right.

Not listening caused me to quit my job, and while I now have oodles of time to rest and relax, I am still my worst enemy. I would clean until I fall down, or I try to stay awake when my body screams for sleep. I still fight with myself over things I could do were it not for MS.

Thankfully time showed it was a great healer, even though it will never heal MS. My belief system changed for the better, my sense of reality also. And if anything good came from being diagnosed, it is my love, my passion and my desire to live, to do, to breathe, to enjoy and to love. I received a second chance in life, and I took it with both hands.

So, if you’re reading this because you’re newly diagnosed with MS or any other chronic illness, read on and  learn from my mistakes. Take a step back every now and then. No one will hate you for it; on the contrary, people will be happy to see you being kind to yourself, because if you don’t, you will pay a price you could have avoided otherwise.

We owe it to ourselves to look after number one, to listen to our healthcare professionals and to listen to our own bodies. Because if you won’t, who will do it for you?

© WVE and Ireland, MS and Me, 2011-2013. Unauthorized use and/or duplication of this material without express and written permission from this blog’s author and/or owner is strictly prohibited. Excerpts and links may be used, provided that full and clear credit is given to WVE and Ireland, MS and Me with appropriate and specific direction to the original content.

4 Comments

  1. msinthecity says:

    I agree completely, I also have always been too active and done to much… But now I try to listen, not always easy but very worthwhile

    Like

    • Willeke says:

      Exactly! It’s a very fine balancing act but the benefits are rewarding if you step back for a minute and choose to sit something out every now and then. Not always an easy choice though!

      Like

    • Willeke says:

      I hope you find a balance that works well for you. It’s never easy wanting to do things and not being able to. Take care!

      Like

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